Pharmaceutical companies are constantly trying to outdo each other and to come up with new patentable drugs for diseases that already have existing drug treatments.. A good example of this is teriparatide, or Forteo in the US (Forsteo abroad), a new class of osteoporosis drug known as anabolic agents. This daily injectable drug was approved by the FDA in 2002.
Forteo is an incomplete synthetic or man-made form of the human parathyroid hormone (PTH). You see, human PTH has 84 amino acid residues but teriparatide has only 34. Teriparatide has become the osteoporosis drug of choice mainly for patients who can’t tolerate bisphosphonates, have failed to improve with bisphosphonate therapy, or suffer from extreme bone loss.
As touted on the drug’s insert, Forteo “increases bone mineral density and bone strength.”
Many unanswered questions
But the puzzling catch with Forteo is that the way in which it works remains a mystery. This is openly acknowledged by its maker, pharmaceutical giant Eli Lilly and Company. The drug’s brochure states that “the role of PTH in control of bone mass is still not really understood” and that “intermittent spikes of PTH, such as given by daily injection, will cause more increase in bone formation than in bone resorption… This has been shown in rats.”
Unfortunately, what has also been shown in rats is the development of osteosarcoma, a lethal bone cancer caused by an abnormal proliferation of osteoblasts or bone-forming cells. Below, I quote again from Eli Lilly’s pamphlet (https://pi.lilly.com/us/forteo-medguide.pdf):
“During the drug testing process, the medicine in Forteo caused some rats to develop a bone cancer called osteosarcoma. In people, osteosarcoma is a serious but rare cancer. Osteosarcoma has been reported rarely in people who took Forteo. It is not known if people who take Forteo have a higher chance of getting osteosarcoma.”
Because of this serious side effect risk, Forteo is prescribed for a maximum of two years. This is as close as one can get to playing Russian roulette! Who would trade a potential fracture for the awful risk of acquiring a lethal cancer? And as if this were not enough, teriparatide has a long list of nasty side effects such as joint and chest pain, muscle pain and weakness, esophageal problems, nausea, and vomiting. Plus having to inject oneself subcutaneously each and every day is most certainly no picnic.
Exorbitant price tag leads to exorbitant profits
The unanswered questions don’t seem to hamper Forteo’s skyrocketing success. According to drug-industry analysts, an estimated 600,000 prescriptions were written in 2005, which generated more than $350 million in revenue. And in 2008, Eli Lilly reported $778 million in sales. (https://newsroom.lilly.com/ReleaseDetail.cfm?releaseid=362195).
Indeed, the future looks bright for Forteo. As predicted by Pharmacor’s June 2009 osteoporosis report, by 2018 Forteo sales may reach close to the $2 billion mark.
One easy way to explain these numbers is Forteo’s exorbitant price tag. It costs nearly eight times as much as bisphosphonates, running up a tab of about $6,700 a year. That’s a pretty high cost for a drug whose mechanism is not even remotely understood!
Doctors ignore ignorance?
Another puzzling aspect of this drug is that while doctors openly admit their ignorance regarding how it works, they choose to prescribe it anyway.
Dr. Roberto Pacifici, head of the division of endocrinology at Emory University School of Medicine, comments that “…how intermittent treatment (with teriparatide) works has remained a mystery”. (https://whsc.emory.edu/home/news/releases/2009/09/bone-building-hormone.html).
This is clearly a rather unusual and perplexing situation to say the least.
And it sounds like a job for Agent 4T0…
Mission: Impossible
Remember the TV series with this name? I used to be a big fan of Mission: Impossible. Each episode began with secret recorded instructions to the brave agents describing a very complex and often dangerous mission. The agents could decide whether to accept the mission or not. Of course, the fearless members of the Impossible Mission Force (IMF) never walked away and in the end, always succeeded. But here's what happens when a reluctant osteoporosis drug is the agent chosen for the mission… Read my Mission: Impossible spoof below:
“Good morning, Mr. Paratide. Your mission, should you decide to accept it, comes from the top boss, Big P.”
“You can call me Terry… What is my mission?”
“First, from now on your new name is Agent 4T0. Your mission is to strengthen this patient's bones and report back to us detailing exactly what you did. And you have to report back to us fast, 4T0. Time is running out.”
“Well, I may be able to strengthen the bones, but I have no idea of what I'm doing! Big P knows that we've been trying to find out without success. I need written instructions!”
“You’re the ACTIVE INGREDIENT, for crying out loud! Plus Big P has given you a team of helpers…”
“What… you mean the Inactive Ingredients? I don’t see how glacial acetic acid, sodium acetate, mannitol, metacresol, and hydrochloric acid can help me. They’re INACTIVE, remember?”
“Stop acting like a coward, 4T0. Here’s a little secret for you: metacresol is highly flammable and poisonous – even lethal in the right dose. It can help you solve this mystery if anyone gets in your way. So get creative and solve it once and for all.”
“I’m not a fighter! I’m just a synthetic wannabe, I don’t know what to say…”
“Remember our motto: Ignorance is Strength. You don’t have to know anything… nobody has to know anything… that’s our strength, 4T0. Big P’s survival depends on ignorance. Just invent something and Big P will make sure that everyone will take our word for it.”
“Yes, I know that's the way we've been operating in the past, but now people are waking up real fast…Why me, why me?”
“This tape will self-destruct in five seconds.”
“Oh, nooooooo!”
So there you have it.
Were you prescribed Forteo? Even if you weren't, please share your experiences, thoughts, and comments with the community below.
I’ve already taken forteo for 2 years. My last injection was in October 2015. My osteoporosis is back and worse now.. My doctor sent me in for Prolia infusions but am not a candidate. As of today the put me back on forteo… With no end date… Anyone else been on for the 2 years and started back up?
I’m surprised to hear you were put BACH on forteo. I’m on it now and my doctor (and endocrinologist) told me that I could only use if for 2 years and never again. After the Forteo, he plans on putting me on Prolia. He said you can never us Forteo again after being on it for two years so I’m a little puzzled.
My endocrinologist from Columbia University Medical Center, NY says there are exceptions where they keep patients on Forteo longer than the recommended 2-year limit. This is only in cases of extreme osteoporosis where the risk outweighs the benefits, depending on the risk of fracture.
They said I was not a candidate for the Prolia… That’s why they have put me on Forteo again. My only concern now is it is not covered by my WellCare:(.
There’s another Anne on here, so I decided to change my name up a little. I’m curious, like she is, why you were not a candidate for Prolea. Can you share? Thanks!
Dear amy,
You cant use forteo again after you finished your 2 years treatment.
…curious why you were not a candidate for Prolia. Can you share? I’m currently on Forteo, but have heard that after Forteo a person has to take another drug to keep whatever you might have gained on the Forteo, otherwise you lose it rather quickly. I don’t know what they mean by quickly.
I was prescribed Forteo a year ago, latest Dexa scan shows little improvement in my bones. I told Doctor of heart palpitations which started a few months ago after taking the drug so I stopped using it. She told me that she never heard of heart palpitations as a side effect and wanted me to go back on it, take it a different time of day and see what happens. Palpitations came back, took myself off of it again. I’ve made an appointment to see a Naturopath, I’m tired of this conventional medicine “wisdom”!
Good for you, Karen, for making your own decisions about your bone health! I hope your appointment with your naturopath is enlightening and helpful.
Yes, I stopped Forteo daily injections exactly after 2 years; that was the prescribed/maximum time any Patient should administer injectible Forteo. So little was known both: *HOW Foteo lays bone down & * what the TRUE Long-Term side effects are.
Born with fine bone structure & multiple Scoliotic rotational spinal curves, I apparently was a good candidate for this “new” drug. I was & am able to walk & while there’s pain from my Scolioses, I’ve know this pain since my 1st spinal surgery. Foteo was begun in 8/2012 & ended exactly 8/2014. After a bit over a year, I was experiencing severe Gastrointestinal, Neuropatholigical & facial bone pain & jaw idiosyncrasies. Today, 8/2016, my bone density is as low as the day Forteo injections began, I no longer have an appetite (guess it’s good for weight loss), if I eat more than 1 meal/day, my GI pain wakes me, it’s so intense, I can’t remember the last time I slept more than 3 hours at a time. I guess worst of all, my Cholesterol (LDL THE BAD 1), is so high, I’m taking drugs for high Cholesterol & Hypertension over the past 2 years. Again, just prior to starting the injections, I never had high LDL nor High Blood Pressure. Plus, while not painful, I began having extra heart beats which as a nurse, knew they weren’t likely dangerous as they did come through with my wrist pulse. I had a Cardiac workup which showed these to be Atrial Premature contractions. At the end of the day, subjectively I feel this injectible drug was closely associated with: Extreme Stomach pains – not ulcers, as I had 3 stomach ulcers at age 22 & they were removed along with that specific pain. Loss of appetite (I force myself to eat small bland meals); this pain is so deep, no antacid nor Famitodine type med alleviates the deep GI pain. My blood pressure is under control but only while taking BP lowering & Anti-Cholesterol drugs. Over the past year, I experience what appears to be, neurogenic feet & hand tingling. This symptom I know from experience with Diabetic patients, is akin to the spasm in tiny blood vessels that spasm due to varying Blood Sugar levels. I do not have Diabetes nor does my A1C shows higher sugar levels over the past few months.
In summary: I’m not convinced Forteo’s benefits outweigh the potential risks. The Medical Community still does not understand how it works so how can they know, what long-term side effects it causes?
It’s comforting to know a nurse has the same concerns many of us lay people have. I shared with my doctor about my elevated cholesterol, but he dismissed it from being a side-effect of Forteo. I’m convinced that it is. As a nurse, what do you think?
I started on Forteo in March 2016 I’ve never had heart palpations but I too am having them…. Was wondering if I should go off of it as well. Also really bad Charlie horses at night 🙁
Yes Charlie horses are a side affect they can be horrible
Just started my second month after taking a 3 week break to get rid of feeling dizzy and nauseated from the first month ( also bone and joint pain). Back on now and it’s day 6. Couldn’t sleep all last night and heart palpitations all afternoon. Not taking it tonight! Have this feeling like an anxiety attack with a touch of depression.
I broke my leg back in 2007. Discovered that I had osteoporosis from taking the purple pill for about 15 years. I was 53 at the time. After 5 months off work my leg still was not healed. There was zero evidence of healing at the fracture. My doctor was baffled. He told me that he may have to go in and do a bone graft and I would be off work for a year. Then I read about Forteo and wanted to give it a try. After battling with the insurance company I finally got it approved. My first xray a week after beginning treatments showed significant healing and an MRI about 4 weeks after beginning treatment showed complete healing. I was back to work the following week. For me it was a miracle drug, a true magic bullet.
Taking forteo was a horrible mistake. The first thing that happened was the return of severe night sweats. Next came fatigue and a myriad of body pains.Finally the swelling and pain around the injection site despite switching from side to side was really not acceptable.
After reading more about it I regret ever taking it.
Could you please give more information about the night sweating. I am on Forteo teraparatide for 1 year. I have started having night sweats recently.
I had night sweats and nightmares on 2 occasions during the first month, then insomnia. I am a nurse as well and really debating if this is worth it!
Years ago I was on Fosomax for several years and started getting pain in my chest, finally got the nerve to stop it and have been trying to use the save my bones regime. I do water aerobics when I can. I am 69 years old and had a complete hysterectomy when I was 37 due to endometriosis. Was on hormone replacement for several years. 2 years ago I turned over in bed and heard a pop in my back and severe pain. MRI etc and showed a compression fracture of t8. Pain subsided after about a month so no kyphoplasty. Last month same thing and now having a kyphoplasty this Friday of t10. This dr who is a spine surgeon and highly recommended has suggested Forteo or Prolia. I’m concerned about either with the side effects .giving myself shots doesn’t bother me. Your advice please. I will have a dexascan in a few weeks. Prior history. I have allergic bronchopulmonary aspergillosis and have been on prednisone 10 mg every other day since 1998. If I lower the dose I start wheezing. History of 4 bronchoscope fir the mucous plugs that develop. Thanks
After two years of Fosamax and lowering bone density results the entire time, my doctor put me on Forteo a few months ago. I have had compression fractures at T8 and T9 and I also have breathing difficulties. I take 10 mg of prednisone daily, sometimes more if breathing is bad enough. I have suffered no side effects from the Forteo injections. (I wish I could say the same of the prednisone.) I have not been on Forteo long enough to know what the next bone density Scan will show. Praying for good results.
Did kyphyoplasty help?
Hi,
My name is Susie and I’m 58 . My T sore is a -4.00! I haven’t seen anyone else in here that bad . I don’t get it and my orthopedic dr sent me to a endocrinologist who is doing a metabolic bone panel and 24 hour urine . I’m now waiting on results and he wants me to go on forteo ! I never even had a dr before except a gyn . He told me not to lift over 10 lbs and that I’m a walking time bomb basically !
Up until 8 months ago I was a runner and a yogi and have been physically fit for years . I don’t eat processed foods, I don’t smoke and I don’t drink any kind of soda . I went thru sudden menopause in 2006 and never took any kind of hormone replacement . I take a calcium and vitamin D tablet everyday . But in the last 8 months I have chronic right side low back pain I’ve packed in 20 lbs and my belly is fat and distended. I don’t recognize myself and I’m scared . I work in retail as a manager and have a very fast paced job.
Any advice? I’m desperate .
Susie
My osteoporosis T score was -3
I have a very similar story Susie.. Please check out the Whole Body Vibration machine with the proper supplements and homeopathy I believe you can find an alternative way to reversing your “Osteoporosis” diagnosis. Search for Becky Chambers at vibrant health .com. I am just beginning her recommend regime and feel very hopeful. My doc also recommended Forteo and my intuition tells me not to take it. So, hope this helps! A good book is “Your Bones, reversing osteoporosis…” By Lara ____? On Amazon, good luck! .
Hi Judy,
I went to vibrant health.com. I don’t know where or how to find Becky Chambers. I’m very interested in what her regime is. Maybe you can copy and paste the link to her. ?
Any direction you can provide will be greatly appreciated.
Hi Susie. I am a 58 year old woman who was diagnosed with osteoporosis -3.9 T score at 55 years old. For the past two years I have been on fosamax. Calcium vitamin d. No improvement. In fact worse. Sent to an endocrinologist did blood and urine tests to check if I was suitable for forteo. I am. I swim ski walk with ankle weights paddle board. Etc. I work full time as a high school chemistry teacher!!! I consider myself relatively active and young at heart. first two weeks on forteo. I was a little more tired and felt muscle fatigue but I pushed myself through it. After three months had new blood and urine tests. Went over with endocrinologist. She was very happy. After five months. I’m starting to feel stiff in my lower back. But stretching. Hot tub and massages are helping!!! Injections are simple and the pain of removing a splinter is far worse. I have also noticed some fat gain in my butt and tummy. But I am gonna work through this because I’m too active to have to become sedentary for fear of a fracture. Hope my experience helps. Everyone though responds differently to different meds. Foods etc.
I am 65 and was very fit until a year ago when I tore and ruptured an L5, was told I had a Cronic fracture also at L5S1 . Then 4 mos ago I fractured L4. Bone test shows I have severe osteoporosis especially in Lumbar T score -.6 and spine -.2.5. My Dr has ordered Reclast but I told her no after reading Drugs.com and Consumer news regarding side effects. Now she wants me to try the daily shots. I have atrial Fib and don’t want the risk. Trying calcium, mag, D-3, C and Zinc, physical therapy aquatics and excercises . I already have pain daily from my injuries.,can’t handle anymore.
God damn I feel like I’m in my 70s reading these comments.
I just turned 22 and I have a lumbar T score -4.3
I also have a bunch of other health problems.
L1 compression fracture from 05/18/2015
Secondary Hypogonadtropic Hypogonadism (Cause of osteoporosis)
It’s been a year and I can hardly handle it anymore. How am I supposed to stay positive when 2-3 months turned into 6, 9, and now almost a year suffering from pain 24/7 failing all my classes and can’t work.
I honestly just wish for death, but feel bad for my parents and brother. As my dream of becoming an artist has been crushed into million pieces. Sitting down is impossible as pain is horrible, standing up I can handle it. On Percocet, Adderall, Valium, Norcos, Soma, Xanax, HCG, Gabapentin, Arimidex, nasal spray, inhaler…etc.
No 22 year old should live like this. Fuck osteoporosis and fuck this life. When I saw “Possible bone cancer” I laughed and said fuck it who gives a fuck anymore. Gonna inject for the next 1-3 months and see what happens.
Be optimistic… Pray and ask Allah (god).. He created you and can recover you..
Only in your dream world I am afraid. There is absolutely no proof whatsoever of the existence of a god let alone that he created us.
Bill my heart goes out to you God is real I know because I have a personal relationship with Him. I cannot convince you of anything but I would encourage you to invite Him into your life He will not disappoint you. John 3:16
Mr. Buffalo Bill – Mind your business! And can you prove that there is no God? No? I didn’t think so
B.Ford, can you prove there IS?
People your age do not simply develop this disease without an underlying problem. If it is due to an eating disorder, then nothing can help, until until you get the help you need. Same goes with other medical conditions. You don’t say the reason for your density problem, but whatever the cause, Forteo could relieve some of your bone pain and give the time needed to address whatever the underlying cause might be. Good luck to you.
I’m 38 and was first diagnosed w/ osteoporosis around 26, when I got compression fractures in T4 and T6, and something in lumbar but I forget which because it wasn’t diagnosed until years later. I’ve taken Fosomax and Actonel, neither did anything to increase scores much and Fosomax in particular messed with my stomach a lot.
As of a week or two ago my lumbar T score is -3.2, Z score is -3.1
Hip Neck T-score is -2.6, Z-score -2.2.
I’m including Z score because I’ve been told by the PA I met recently that due primarily to my age (?), the Z score is the more accurate measure.
I have been prescribed Forteo and want to try it very much, but am currently figuring out how to be able to pay for it. There is no known cause for my osteoporosis, but I bet there is an unknown one. I posted you also have very low bone density for your age, a rare thing, and we share a medicine.
I’ve been on Adderall also since roughly 21, long enough that it could theoretically be a contributing factor (I’d been on it 5 years when I had my first fracture). I briefly had a gabapentin rx, but only for a month when it wasn’t as powerful as what I was already taking (marijuana daily and phenibut 2 or 3 times / week).
If you don’t mind me asking, how long have you been taking adderall?
Forteo doesn’t tell you this but they have a co pay program, you have to ask for it. They never deny anyone. It will cover the go pay that your insurance doesn’t!
I FEEL THE SAME WAY SAM. ONLY I’M “NOT” GOING TO PUT THE FORTEO IN MY BODY BECAUSE OF READING THE SAME THING YOU MENTIONED, POSSIBLE BONE CANCER!!!
I AM IN SOME SORT OF PAIN EVERYDAY. EVERYONE OF MY VERTEBRAE HAS A COMPRESSED FRACTURE, I HAVE LUPUS, AND HEART AND LUNG PROBLEMS! YEP, I’M A MESS AND I SOMEHOW MANAGE TO GET UP EVERY MORNING AND MAKE IT THROUGH ANOTHER DAY.
I FOUND A DR. THAT USES THE LIVE XRAY MACHINE THAT SHOWS HER EXACTLY WHERE TO INJECT MY BACK AND I HAVE HAD FANTASTIC RELIEF. IF YOU ARE INTERESTED IN TRYING THIS, LET ME KNOW AND I WILL GIVE YOU THE DR ‘S NAME AND WHAT IT IS CALLED?
PLEASE HANG IN THERE, YOU NEVER KNOW FROM ONE DAY TO THE NEXT WHAT COULD HAPPEN.
9 years of clinical cases in human, only 1:100,000 chance of getting bone cancer.(0.4:100,000 in general population…)
https://en.wikipedia.org/wiki/Teriparatide
Teriparatide has a theoretical risk of osteosarcoma, which was found in rat studies but not confirmed in humans.[1] This may be because unlike humans, rat bones grow for their entire life.[1] The tumors found in the rat studies were located on the end of the bones which grew after the injections began.[11] After nine years on the market, there were only two cases of osteosarcoma reported.[6] This risk was considered by the FDA as “extremely rare” (1 in 100,000 people)[5] and is only slightly more than the incidence in the population over 60 years old (0.4 in 100,000).
Lynn, I am very interested in these injections you are getting that help. Also, would like to know if you are taking any other pain meds along with them or whatever. I’m having a very difficult time each day staying mobile, a lot of laying down to keep out of pain.
Hi, my name is Cher. My story although different seems closers to yours than anyone else on here. I am 32, I had ovarian cancer at the age of 26 and went through menopause after hysterectomy and treatment. I have osteoporosis and have for years. Nothing else has worked and I have started to get fractures. Not in my spine yet but just had another dexa scan and I decreased by 13%. My T score is really bad. I’m starting forteo next week, I mean what other choice do I have right?
Hi,
I’m praying for you! Two years ago I was put on Forteo. I took it for five months and then quit because side effects. My side effects included incresed urination, brain fog, and depression, Additional side effects that I consider positive were increased appetite, weight gain of 5 lbs, and regrowth of my hair. I had been on 20 mgs of prednisone daily for years and lost my hair, appetite, bone and vision. After I stopped Forteo, I reduced my prednisone to 7.5 slowly over 1.5 years.
I recently went back to my Dr. and she was very angry that I stopped Forteo and informed me that “You have the worst case of osteoporosis that she had ever seen, and you just lost your best chance at helping yourself.” She
ordered a dexiscan, bloodwork and told me to come back in 3 weeks. My
bloodwork came back great and my
scan showed a 20% increase in bone
density in my lumbar vertebrae and no other bone loss. There was additional bone density in my hips and neck, but
not significant.
I started the Forteo again this week.
The side effects this time to date are a
mild depression, and hot flashes. I will
continue take it if I can tolerate the
side effects. It is better than ending up
in a nursing home from fractues.
I wish you well, and pray that your recovery comes quickly.
I excercise, eat healthy ( if you don’t include sugar), and maintain my calcium and vitamin D levels without supplements.
Thank you all
But especially Linda because you gave me the strength to start my Forteo today when the nurse comes
I am not thrilled with any Side effects
Enough Of them I already have!
But if this can build bone.
It will be worth it
For me I hope it does!
Minimally get off of the Arimidex unless you have estrogen responsive Breast Cancer. Arimidex is one of the worst drugs for exacerbating bone loss / causing osteoporosis other than glucocorticoid steroids (hydrocortisone, prednisone, etc). Some men use this trying to raise testosterone levels, but while testosterone levels may go up ESTROGEN in men is likely more important for bone health than testosterone and the effect of testosterone on men’s bones is likely mediated through conversion of testosterone into estrogen being blocked by Arimidex.
I wanted to check on Sam… My heart broke when i read your post. No one deserves those kinds of health struggles at 22. I’ll spare you my story, but suffice to say YOU ARE NOT ALONE!! I pray each day for the will to go on, and I’ll add you to that prayer. I believe God has a plan for each of us (although granted a lot of the time, it seems like the plan sucks. ;-o). Don’t give up…I think that’s key!
I have been on Forteo for about 6-8 months and haven’t had any side effects. I have had a hip replacement 6 years ago and I do have spasms there and pain when I walk on and off. I have my check up and I am going to ask if the forteo is causing this..?
I watch my grandchildren full time and it is starting to limit
Some activities with them,!
If she says no, then I guess I have to contact my orthopedist and find out what is going on!
I am confused by many of you saying you have been on it for years! I was told I can’t be on it any longer than 18 months! After that I will take a pill once a month, prob Fosamax or perhaps something else to solidify the bone
That the Forteo made but is in a soft stage. I will do that for 6 months.
Hey Wendy don’t pay to much attention to the diagnosis your doctors will give you because a hospital specialist told me that I had reumatoid arthritis in every bone and joint in my body from my big toe to my collar bone. I developed this supposebly during the same four weeks as when I was taking forteo. He suggested treating me whith some kind of hormonal drug, which I refused! I asked for a prednizone injection instead. “this drug actually weakens the bone long term” but it it got rid off 98% of the pain and symptoms. It almost seems as if the doctors are agents for big farma.. one drug helps one problem but creates a worse problem(s) so you take another drug to fix “that” ailment etc etc ……………. good for business. Don,t be fooled, most doctors don’t like to admit the humble patient might be right. I’m still keeping my fingers crossed it hasn’t damaged my body permanently.
wish you well. Derk
interesting report.
I took forteo for 28 days After 2 weeks I had pain everywhere, but my support team told me to carry on as this was a normal reaction. After 28 days I was in agony, except for my back, every joint and bone in my body was so painful I could not get out off bed without assistance. I told my support team from ausy to keep their forteo and stick it. She almost sounded disappointed that I wouldn’t continue with the treatment, never mind the excruciating pain I was in. Maybe I was not properly crippled yet (I could still talk and use the phone) After 2 months I am still not quite without joint pain yet but slowly coming back to normal.
I have not heard from the forteo people since I called them to see how I’m doing! Probable to scared for a law suit.
So for those thinking about taking this shit! Be careful!!!
Good health!
Hi I have been on Fortao for 7 months the last 5 months I have been feeling so terribly bad, every bone, joint in my body hurt I could barely walk could not get out of bathtub, couldn’t sleep because I hurt so horribly . I felt like I was becoming crippled did not realize that the Fortao was doing this, until I looked up the side effects. I believe in another month I would be in a wheelchair. It would take me 15-20 minutes to walk from my car to my job. I started taking a 6 day prednisone pack which I know is not good but I feel much better , I was at the point where I felt completely depressed and just wanted the crippling to stop. I have no idea what is going to happen when the prednisone wears off its a awful feeling to become crippled. I have quit taking the Fortao for 3 days now.
My mother took Forteo shots during it’s trial period. I was horrified to read on the initial flyer inside the prescription leaflet that Forteo caused cancers including leukemia. Sadly several years in later in 2007 my mother came down with Stage 4 Lymphoma. She died in 2009 of Lymphoma. I’ve always wondered if the Forteo shots caused or contributed to her death.
I took Forteo for two months in 2006, all my insurance would pay for at the time. While I agree that diet, exercise, balance training and supplements are essential to preventing bone loss, PTH is THE ONLY osteoporosis drug I would take other than calcitonin (very ineffective, though also inexpensive – a hormone derived from salmon), or hydrochlorothiazide (a calcium-sparing diuretic commonly prescribed for blood pressure). We know that PTH works in humans in its longer-chain form because we make it ourselves; the mechanism by which it stimulates bone, although not understood, is a process of our own bodies. The rats used in the study were from a germ line prone to bone cancer. Humans have not shown an increased incidence of bone cancer since the launch of Forteo. Unlike bisphosphonates, it does not accumulate in bone; once you stop taking it, it clears the body within days. Although made by bacteria genetically modified to produce human PTH, this drug is organic as opposed to synthetic in nature. I haven’t pursued a new prescription because its effects recede after treatment, as also happens with bisphosphonates, and, at 44 with mild to severe osteopenia depending on the location, I hope a better answer comes along. If I had a nickel for every doctor who prescribed Fosamax… But, conversely, if I’d refused antibiotics for every Strep or ear infection, I would be long dead by now.
I was given to understand that Forteo is synthetic. I do not understand anything about that but my bones were SO BAD -4 or however it is measured. Had a compressiomn fracture already. All I did was twist a little…plus, I had cancer (2004 treatments radical chemo/radiation) and the treatments kind of toasted my bladder (among other things including bones but we don’t have enuf room to go there) so I couldn’t take anything else. I am finished with Forteo in October of this year. I do have an odd thing going on. In my back there are two places that feel like something is scratching on the INSIDE! I have told Everyone and had x-rays but no one can find anything! Anyone else had this? Thank you for letting me speak this! They say I am safe from bone cancer. So, who to believe?
Dweezilbeans
I have been on Forteo for three months. Like many of you, I have the same fears. I did get a second opinion about Forteo from my internist. He recommended I take it. My Gyn prescribed it. I was on Reclast previously and Actonel before that. The Actonel gave me severe acid reflux. I’ve been on medication for acid reflux for three years. The Reclast did not help my spine as well as my doctor had hoped. My score went down to a -3.1 after being off of the Reclast for a year. I’m fortunate in that I do not have any side effects from the Forteo, however I did notice (as well as my hairdresser) that my hair is not growing as quickly as it was before I started taking the Forteo, which I plan on telling my Forteo representative.
January 9th 2016 I suffered a t11 compression fracture while on my way back home to Illinois from San Juan. The result was 3 weeks of trying to get test results from a Kentucky emergency room to my orthopedic doctor here. He immediately referred me to neurosurgery. The new doctors office has an osteoporosis Doctor onsite and a clinic. Post surgery ( vertebroplasty) I was referred to the osteoporosis clinic as my bone density is -4.987. I’m 42 years old. 5″1
3/4 inches. About 100 pounds currently and post hysterectomy at age 26. Also I’ve never been on hormone replacement therapy and now I don’t know why! I asked every year or so but they kept saying Premarin was causing heart attacks? Now that I’ve had an MRI on my back we learned 2 other bones t10 and t9 had small fractures and t8 is only about half the size it should be. Should note I used to be 5″3 1/4 so I’ve lost almost 2 inches of height. So instead of the medicine to stop bone loss they wanted the forteo to rebuild bone growth. It arrived today and I’m scared to death to use this stuff. Seems here I am reading mixed reviews from other patients. I’ve already lost 22 lbs over this ordeal from the constant puking from pain medicine. I can’t lose anymore weight. I normally have a lower BP 92/54 is my normal so reading sudden drops in BP can occur ? Nausea and vomitting ? More pain? I’m really anxious over this prescription and I just don’t know what to do. I have a bad feeling about it and I can’t shake that fear.. I’m afraid of this crap! I’ve never been so afraid to use a medicine and have always trusted my doctors but as I am learning now I should’ve questioned more back then and I don’t want to make the same
Mistake now. This drug has me a basket case. Called my doctor and they dismissed my concerns entirely and said to stay off the internet !!!!
I have been taking Forteo for 4 months now. I have noticed increase indigestion, joint pain in both hips, and severe chest pain. I didn’t know if any of this was Forteo, but after reading this, then it all makes since why I have been having these symptoms. I hope this helps.
Have your side effects improved or remained the same? Thanks for your response!
Rebekah,
HRT throws a red flag. Do not take HRT; it causes breast cancer. My best friend is proof; watching her suffer through dealing with breast cancer, and knowing for a fact the HRT caused it was horrifying. Doctors should NOT prescribe HRT to anyone, but rather encourage alternatives. Find another way. Best of luck to you. God Bless You.
I to have fractures in spine but due to accident. Had a major spinal fusion and after long study of drug I decided to go ahead with it. I was told that if any part of my fusion failed due to non healing of bone, it increased my chances of doing surgery again. I started Sept 2015 and was planned for 2 yr course. I discontinued this month (June 2016) due to side effect of chest pain, tightness, and jaw pain and a few other quick onset side effects. The care team told me the side effects would go away soon, its been 15 days and effects are less but still having, they want me to restart but im not going to. If the drug did its job I should be well healed by now anyway. It wasn’t worth the chance of not healing so the other very scary possibilities didn’t matter if I didn’t heal well and my quality of life was bed ridden. I am physically doing great from fusion and the other symptoms will go away. Unfortunately we have to weigh our options at times. I will pray that you find the answer that best fits your life.
I am 61. I had a complete hysterectomy when I was 34 due to endometrosis. The dr.said no hormones because of the “cancer’ scare. I went into immediate ‘change of life’. Hot flashes, mood swings, weight gain.At the time I weighed 100 lbs. My bones started deteriorating .I stayed with this Dr. For 13 years. I thought he was a good Dr. I am almost crippled. My Osteoporosis Specialist that I now see says that I can break my hip by just sitting. The fosomax, prolia, and Reclast are all A big Joke. I have tried those. Forteo is my only hope. I will be using it . I used samples in 2013 and will use a year and a half . I have to. I have no choice. I was once a very active and vibrant woman. This disease is not taking me down. There is more and better medicine coming down the pipeline . She is on my side . I trust her. If I had it to do over I would have demanded estrogen when I had my hysterectomy . My pain when I stand for only a few minutes is really bad. I can do this. I want my life back.
Rebecca, I am so sorry for your pain and understand it. I am 53 and also was thrown into osteo due to a hystertomy. My dr. Told me I could roll over in bed and fracture a bone. Horrified by it I chose to take Forteo sfar other drugs did not work. I have completed my 8th month and happy to say my pain in spine, hip and pelvic are so much better!! Almost gone actually! I am having some issues now with head pain and neuropathy. I have have had so much blood work and even gone to neurologist who wants to do a spinal tap and MRI on brain. I have seen my intergrated Dr and she seems to think it is side effects from the drug. She told me to back off of it for a month to see if my symptoms gets better. I am doing that now. I would take the drug if I were you. You cannot just continue to crumble. Good luck!!
After being on this medication for 6 weeks, I took myself off as of today.
I’ve lost 20 lbs from being chronic nauseated. I had stomach cancer in the 90’s they removed 2/3 of my stomach fixing it so I could no longer throw up. Well my nausea been so bad with this medication I’ve been throwing up. Which I’ve been unable to do since my stomach surgery.
My body temperature at night time is so bad i’m unable to sleep or get any restful sleep. Waking up every 30 minutes.
Top it off my blood pressure got so high i was in the stroke zone rushed to the ER in an ambulance with my BP 202/101 pulse 120. I’m now on BP medication. Which I will stop after I feel this medication is out of my system too.
I’ve called my nurse at Forteo an told them not to send no more as well as my Dr. that prescribes it an spoke with her nurse to tell her I won’t be taking it no more.
This medication needs to be moderated more closely when it is first given to a new patient.
I stopped this drug after 6 months, felt the risk was not worth the results as five family members had some form of cancer. I currently have trouble sleeping even with a bipap, pain in legs, hips, knees, and shoulders. My fracture at L1 was from lifting a young man from sitting position. Do not think bone density would have made any difference since he weighed 110 lbs and I forgot to lift properly. (Got up in middle of night and did not think of correct lifting measure.)
It has has made me think twice about the situation. Lot more research.
That’s fantastic, Victor. It is so important to think and research first before deciding whether or not to take any drug.
After 5 months on Forteo my bone density tests results show improvement in all categories. I tolerate the medication well and experience no side effects. I am taking a conservative approach and will remain the on Forteo 12 months. This should result in signifiant improvement over what my bone density tests were before i started Forteo.
Glad to see a positive & encouraging comment as I commence this medication next wk & I’m nervous ..
After two separate falls and breaking my arm in three pIaces, I was diagnosed with a T-score -5.4 or similar and was told they had not seen such a bad T-score result in someone my age (65 at the time). Since I have ongoing stomach problems, they ‘offered’ Forteo. I read your book, which was enough for me to reject this drug, much to the disappointment of some of my family members. I take the supplements, follow as much as I can of an alkalizing diet and do the Densercise Exercises as much as possible, I feel stronger and keep hoping that this will help.
Keep up the courageous work, Marion! It’s hard to go against the mainstream, but you can do it!
I am 45 yo and been very active my whole life. I had a total hysterectomy at 35 due to advanced cervical cancer. I am on inhaled steroids and on/off oral steroids periodically for asthma. I have always been a runner but decided to start running marathons. Last year my first training attempt was aborted due to a stress fracture in my right hip. I had bone density scan done and was noted to have significant osteopenia in my hips despite being on hormone therapy since my hysterectomy. So I started on Boniva. I started training again this year in February but kept my distances low due to asthma exacerbations. I did compete in a couple of sprint triathlons over the summer and did well so I decided to start training for a marathon again. Within 3 months of pushing my distances I developed a fracture in the distal tibia bone (medial ankle). Once again I had a bone density and found my scores were even worse. I have since been started on Forteo at the suggestion of my orthopedic surgeon at the very least to help heal my fracture. We have discussed staying on it even past healing fracture. I have been on it for a month and haven’t noticed any side effects thus far. I almost feel like this is my only hope. I’m 45 and have had 2 fractures within almost a year. All of my dreams of running marathons are likely pipe dreams now but I want to at least stay as active as I can for as long as I can. All the comments and reports on Forteo are rather terrifying. I wonder if there are any other meds in the pipeline that will do the same as Forteo without the side effects? What other choices do I have if Forteo is such a risk?
Hi Christye, I just completed 2 years of Forteo injections, I will be 42 next month. I developed osteoporosis after using Depo Provera for birth control, and fractured a vertebra while riding my horse. My endocrinologist put me on a once weekly dose of Fosamax which I quickly decided I couldn’t tolerate – terrible pain in my shoulder into my back, could barely move my arm, and neck got so stiff I couldn’t turn my head. Those side effects went away within a few days, but same results after the next dose. I never have noticed side effects from medication in my life. The endocrinologist decided that since I was only 39 at the time it would be best to try to build the bone instead of trying to just preserve what I had left, and she prescribed the Forteo. As my back fracture healed during the next few months I swore I could tell my back was feeling stronger – it was hard for me to be on my feet very long like standing in the kitchen cooking, etc but slowly I was feeling stronger. After 2 years of Forteo, I am back into osteopenia instead of osteoporosis! I was at -3.5% compared to baseline, and now I checked out at 14.1% compared to baseline. It says an 18.2% improvement. My T score was -2.6, now is -1.4. Very exciting to me! I’m not sure if there is anything else coming along that would have less side effects, but for me I didn’t experience anything more than occasional leg cramps when I tried to ride my exercise bike, which I will not say for sure was from the Forteo. Keep in mind when they mention the bone cancer possibility – the rats were tested at a way higher dosage/ratio than what is prescribed for us. I know people seem to tolerate things differently, but I had success with Forteo.
Christye and Andi — Thank you for sharing your stories. I’ve had similar experiences with multiple stress reactions/fractures (3 since 2008) and was just prescribed Foreto. I just turned 44, am pre-menopausal, and am very active. I was training for my 11th marathon when I had another stress reaction in my tibia on December 19, 2015. It didn’t heal as quickly as it should have (even though I was very compliant w/ resting it, etc.), and progressed to a stress fracture (still wearing that $(%& boot). I am determined not to stop running and am desperate to get back to it. I was originally prescribed Foxamax by my internist, but after researching it, I quickly decided not to take it. I just saw an endocronolopgist yesterday who told me that Forteo shows promise with rebuilding bone in pre-menopausal women, and that I’d only need to take it for 6mos to a year. I was hesitant to take it, but given that I was already doing the things we’re supposed to do to have strong bones before this last fracture, I think it’s my best option. Don’t give up on your marathon dreams, Christye — there may still be hope!
I was in perfect health all my life until I broke 2 ribs and had 3 compression fractures of the vertebrae, all non stress related within 2 years. My mom aunts and cousins all have osteoporosis and kyphosis. I am now 58 and just started my 5th month on Forteo and notice swelling in my cheekbone on one side. I went to my internist yesterday who ruled out any infection or sinus problems and told me to stop taking the Forteo until my bone specialist does a scan. She had a patient on Reclast that developed 6 dime sized bone spurs and she is concerned about that.
My bone specialist stopped me from all heavy lifting and exercise, except for walking, a year ago. I feel weaker than ever and want to build muscle. I hope the specialist responds today since she has not returned previous phone calls.
I am thinking I should just stop and start exercising and getting healthy through changes in diet and reducing stress.
Any advice appreciated!
l was at LAX bending to lift a heavy bag when l collapsed in excruciating pain. l thought l had been shot.! After returning to England l saw chiropractors for 3 months hoping to relieve my back pain. When they said they would not treat me unless l had an x ray. l did and found to my horror, not only had l lost 4 inches in height but l had 5 wedge fractures plus others in my C section (spine) several rib fractures (due in part l must admit by an enthusiastic chiropractor, and had severe osteoporosis. The surgeon was wonderful and ll had vertebroplasty in 5 vertebra and put on alendronic acid. l could not tolerate the pills and they burnt my stomach and had awful side effects. So l was put on Forteo. So much better and yes there are side effects that come and go, nausea being the worst, tiredness and leg aches. l also have been diagnosed with arthritis, degenerative sub articular cysts in my neck vertebra and seem to be ageing quickly.!! (rusty). It seems to have all come at once.! l am 64, been physically active all my life and the difficult part is lifting anything, even a kettle as my spine is teetering in places where the degeneration has really kicked in. l have been on Forteo for 2 years now and just had my bone scan. l feel better in myself (stronger and my bone density has increased by 28% ( It is now -1.9 T score (It was initially when tested T score -3.6. l have hope. Now that l am coming to the end of 2 years on the drug l am now having been recommended by my specialist to have an intravenous drip of Zoledronic acid. So we will see where that goes. l also take an extra vitamin D high supplement to help the calcium absorption. Yes l find this condition absolutely debilitating sometimes and the pain in my hips and spine are so tiring and distracting. l just have to lie down and rest my spine. But l am better than l was and the pain is not so frequent so my spine has got stronger. Hope is a wonderful thing.
I went on Forteo recommended by my doctor after having a terrible reaction to oral meds for osteoporosis. I experienced terrible muscle spasms in my upper chest to the point where I could not walk and barely breath thru the episodes. I worked in a warehouse pulling orders and would have to stop in my tracks until the pain subsided. I had never had that happen before using this drug. I went off after about 5 months of injections, but to this day (7 years later), I still have the spasms when I am tired or have been upright for an extended period of time. I put the blame on this drug and will never take anything for my bones again. Drug companies are only interested in the $$$$, not the patient. Done with giving my hard earned money to exchange one problem for another! thanks for giving me a place to vent! Donna
I took forteo and almost had to have parathyroid surgery, but refused to have surgery, after being off forteo a long enough time my numbers returned to normal. It caused a high calcium level in my blood stream. Causing me to be very tired ALL the time. I called Eli Lilly and they did not seem interested even though there is a parathyroid harmone in the drug I was told by their pharmacist. I wish we could get it off the market. I have never taken drugs, till I took forteo I will not take any drug again I will stick with healthy foods and water and minerals. Tanuel
Unfortunatley, I think Donna is absolutely correct about the Drug Companies being interested in $$$ only. The FDA does not require Chemical Drugs to disclose their ingredient list content, so the Doctor nor the Patient know what they are really using. Sure: There may be package warnings about side effects including cancers and death, but why is the Public not aprised about the Chemical Content of Prescribed Chemical Drugs so they can make an informed decision for themselves before taking Chemical Drug Cocktails. I work in supplement compound technology for internal disease and all the ingredients that are incorporated in the proteins, vitamins, herbs, minerals and enzymes I use are fully disclosed on the labels. Sadly, in my view, the FDA, USDA and the State Depts. of Health work to make it look like they are protecting the interest of the Public, when in reality this facade allows Chemcal Drug Companies to sell products with undisclosed dangerous ingredients that can lead to various forms of Organ Failure, Cancers and Death.
The Chemical Drug Industry sells about 80% of its’ Anitbiotics whichinclude other Chemcals along 85% of all the Steroid Growth Hormones made that come to or are made in the USA to The Meat Poultry Fish Dairy Egg Industry. The Animal Slaughter Industry uses the cheapest forms of protein they can to feed Meat Poultry Fish Animals including their own Sewage, Blood and Flesh Parts that can not be used for Human consumption including Eutahnized Cats, Dogs and Roadkill.
Meat Poultry Fish Dairy Egg Labels do not disclose ingredients and there is a good reason for this: You probably would not eat them if you knew what was in the feed of these poor Animals.
I eat Vegan Veggie Burgers, Veggie Hot Dogs, Veggie Sausages and Veggie Chic’n Patties grilled “Crispy” on the outside. They do not contain Eggs or Dairy. I use Vegan Vegetarian Pet Foods for my Dogs and Cats and woud never trust a Meat Poultry Fish Slaughter Co. to provide my Family with anything, much less the Chemical Drug Industry. I have eaten strictly vegetarian substitutes for Meat and Poultry Products along with salads for over 40 Years.
I have no health issues other than a back injury I sustained in a 2014 Car Accident and it has improved. I have no High Blood Pressure, No Hypercholesterolemia, No Osteoporosis, No Cancer and I weigh the same as I was in my 20’s, but my physical performance exceeds and intellectual capacity exceed that of what I had in my 20’s. People tell me I look like I am in my late 30’s to early 40’s, but I am in my 60’s. You can see me, Eric Weisman, speak on u-tube at the World Vegan Summit last March. I will be speaking at the Green Planet Festival in Fort Lauderdale on Feb. 27th, 2016. I hope to see you there.
My T scores after breaking my left leg at the tibial plateau were measured at -1.0 to -1.7 and I predicted my t scores before my Primary Physician even told me what my scores were, would average out at -1.5 due to the fact I was taking Phenobarital for epilepsy for years before I was finally tested for my DEXA scan, which should have occured when my neurologist and primary physician when the put me on Phenobarbital, but I was never tested until I fractured my left knee at the tibial plateau, I have cronic nerve pain now below the ankle, am taking what anyone would call massive daily doses of nuerontin for the nerve pain, and still suffer break through nerve pain that never really ends. Lyrica is out of my financial reach, but works well in dealing with my pain. My observations are that DEXA scans prior to prescribing Dilantin and Phenobartal and all other antiseizure medications is a matter of The Standard’s of Care that all physicians MUST adhere to or risk the facts of being sued for Medical Malpractice, to be filed against you and your practice. Heed this advice, my physicians really did me alot of real harm, don’t let this happen to you, demand a DEXA scan before you let your Dr. ruin your health with antiseizure medications. Unforetunately for me and my Doctors, the damage is done, now it’s time for the lawyers to step in, on my behalf.
I am a 55 year old female who has had stage 3 breast cancer, broke my ankle and had surgery five years ago and am going through PT after a femur bone brake that now has a rod and pin. I do have osteopena and have gone through menopause due to the cancer. I also have esophagitis.
My orthopedic doctor has stated he wants me on the Forteo. I am not sure that it is the right drug for me. There is the two major breaks in 5 years that is concerning.
I am asking for your opinion.
Lisa
I am a 91 year old female who has been very active all my life. I had been taking boneva for several years and when I developed femur pain my doctor took me off it. 2 months later I broke my femur. I think it broke and that is why I fell. I now have a rod and 2 screws in the femur. I have just been taking calcium since then. I fell 5 months ago and broke both bones in my wrist. Recently had a bone density test which showed a lower score. Dr. wanted to put me on prolea, but after reading side effects was the same as boneva. I’m not sure that forteo is any better. All have bad side effects.
If you have had cancer don’t do that drug.
After 2 months of Forteo experienced extreme joint pain and muscle weakness, debilitating nausia and vomiting.
What did you do? Did you stop taking the Forteo? Did the side-effects go away? How long did \it take?
What did you do? Did you stop taking the Forteo? Did the side-effects go away? How long did it take?
I was on Forteo for four years. . I had good months and I had bad months. 13percent of my lumbar spine grew back. I am no longer at 69percent. Now at ostepenia. The daily shots were easy to do but many of the side effects were bad. Some days I couldn’t get up and would crumple when I did. I would get nauseated some months for entire month. I would be dizzy often. I had what I call traveling pain. My pain would pop up in a different area each week. Or move from one joint to another in a day. Get into the Bone Girls Club online and on the Osteoporosis blogs. You will find many other people to talk to about all of this. Good luck. I would do it again.
I’m into 6 wks of Forteo horrible leg and hand cramps, cannot sleep, migraines with a vengeance, dry sore mouth
Dr has taken me off for a week to see if these issues clear up. I am praying for guidance I want quality of life
Vivian,
I was on Forteo for 2 years and it did help my T-Score. Then the doctor put me on a bisphosphonate – alendornate. He said that if I did not take it I would loose the improvement from Forteo that I got and all that money would have been wasted. Forteo benefits fade away unless you take a bisphosphonate. Is that true. Is that that way to go continue with a bisphosphonate or is your save our bones program with calcium better from here on. Which direction should I take? Please advise.
Hi Lawrence,
Osteoporosis drugs can sometimes bring up a T-score, because they measure bone quantity, not quality. The problem is that the bone may be denser, but also harder, dryer, and brittle because the density came about as a result of disrupted bone remodeling. (Shedding old bone cells is vital for bone integrity, and drugs stop that from happening.) Of course, no one can make the decision about which path to take except you – but you are clearly doing your research, so you can make an informed decision.
Thank you for your thoughts.
I am on a 3 month trial and have been injecting Teriparatide every day for exactly one week today.
Apart from multiple fractures I am quite fit. Or rather I was. Now I feel quite ILL. You have reminded me regarding quality not quantity of my bones. I also feel sorry for any living creature given bone cancer on behalf of research. I look forward to the day we do not have to do this.
Again thank you I feel I might not run the full three months. Everything is telling me this is not for me. The choice of a possible fracture or risk however minimal is making up my mind. Christine.
Hi Christine,
I want to encourage you to listen to your instincts. No one knows your body or your health like you do.
I have osteopororis and Paget’s
Dr wanted me to take Forteo – said that was the only choice.
Had the shots twice a year for
two years and Actonel before that. Actonel helps with the Paget’s but not the bones. Anyway after consulting with a couple other
Dr’s and reading up on it decided against taking the Forteo and am back on Actonel. Do I have any other choice – if it weren’t for the Paget’s would try your program for the bones. ????
Thank you for your input. I am on a 3 month trial of Teriparatide injections. I feel ill, sick dizzy heart palpitations and my concentration is poor. I am that close to quitting. Knowledge that medical authorities admit that they do not know how it works is helping me to decide. Your comments are very helpful.
I’m 54 year old female who went through menopause at 34. After 10 years of hrt, started reclast, my bones continued to diterate. This year’s scan was T=-3.9, I was immediately prescribed forteo. I’ve been on it 4 weeks and have bad bone pain and fatigue but worth it if I can go back to jet skiing and being active!!
I was on Forteo injections for 5 1/2 weeks and that was over two years ago. Since then I have had an acid taste in my mouth constantly. My dentist pointed out that it is ruining my teeth. I have had more dental appointments in the last 2 years than I have in my life. I am going to see my Primary Care doctor asap and then possibly a cancer/bone specialist.
My Mom is 88 and has been taking Forteo for 3 months. She has osteoarthritis, and she has just had a massive flare up. She has not had this level of incidence since she went through menopause.
Does anyone else have any experiences like this? She has no other changes in meds or activities or diet.
I was put on a three month trial of Forteo. Although I do not have osteoporosis I had an atypical femur fracture which is still not healed after more than 2 yrs . Also had triple arthrodesis ( fusion) of my left foot in two surgeries at the beginning of the year, also not healed. After one week of Forteo I was taken off it due to a massive flare up of rheumatoid arthritis unlike any I had ever experienced: massive swelling and pain in joints never before affected and particularly my wrists, hands and knees.
I was on Forteo for 5 1/2 months. While on it, my calcium levels peeked, and I developed severe pain in my shoulders, wrists and hands. This pain was identical to pain I had about 9 years ago and was identified as pseudo gout. It’s not gout but calcium crystals in the blood that attack joints. While I had it, and it was very difficult to get rid of, it attacked my knees and all joints in my body
Did any doctor diagnose your problem
I’m just wondering. My doctor wouldn’t even address the issue
I’ve been off Forteo now 4 months and feel great
45 year old L1-2 spinal cord injured paraplegic, 30 years post injury. Suffered a right femoral fracture during PT stretching.
T Score for left thigh is -2.3. Hip is -1, Spine and Forearm are normal.
Dr wants to put me on Forte for 2 years.
Dr does not have much experience with SCI patients and this treatment. Mostly works with Post Menopausal Women. Anyone have experience with my type of situation? The mechanism of bone loss in my case is different than age related bone loss.
Your blog is an excellent example of fear-mongering and selective choice of information. You may think you are “helping people”, but you are not. Forteo is not the best choice for all patients, but it remains a good choice for some patients, and has a very acceptable benefit/risk ratio if used appropriately.
I have been on Forteo twice for 2 years. The last round was about 6 or 7 years ago. My doctor wants me to use it again but I am just really afraid to. Any advice? You seem to think it is a safe drug. thank you
Camille by the way I am 64 years old
I developed difficulty in swallowing and they wanted to do parathyroid surgery on me I had a high calcium count in my bloodstream which is an indication of parathyroid problems I went off Forteo and the blood calcium returned to normal good thing I did not have surgery. I still have a swallowing problem. Take care to correct any problem with good food ,akaline water and minerals for a start.
The instructions say not to use it for more than a total of 2 years in your life. I’d mention that to your doctor.
I am a 62 year old woman who 8 years ago was diagnosed with severe osteoporosis after numerous ankle/wrist fractures whose pain I had dismissed and ascribed to “getting old”. I then tried oral alendronate that, after 3 months, nearly killed me from an esophageal spasm that shut down my airway completely, I am a registered nurse and was at work in a hospital when I suddenly could not breathe. Had i not been close by to immediate medical attention I’ve no doubt I would not be writing this now. Also, being an RN, I was careful to take the alendronate exactly as directed—it still nearly killed me.
My physician urged me to try Forteo as really, that was pretty much the only other option for severe osteoporosis repair. We reviewed the clinical trials, including info about the common side effects and possible severe adverse effects including osteosarcoma. Longer term use of Forteo increased the likelihood of bone cancer, but, interestingly enough, the most benefit of the drug is within the first six months. The benefits continue a bit afterwards, but the risk increases as well.
We already had a baseline bonescan–I had extreme bone density loss despite being an active athlete and equestrienne. I started the daily injections of Forteo and was followed VERY closely by a nurse case manager from that company–had to check in with her weekly. I did have some minor initial side effects–nausea mostly–but they disappeared after the first two weeks as we thought they would.
At the four month mark I had another bone scan and had a 4% increase in bone density! The bone pain that I thought was “just arthritis” before taking Forteo was gone and had been gone since the first month of injections. My MD and I decided to discontinue the Forteo at that time–somewhat from a risk perspective, mostly because it had already done what it claimed it would do.
If you are prescribed this medication by your doctor as a last resort as I had been, go and try it. Show your MD this post even–you do not need to take Forteo for 2 years! I was lucky in that my insurance covered it, but, honestly if I had known initially that this drug would do what it promised and that I would have no more pain nor have any more fractures, I would have borrowed the money somehow to cover the first four months.
You are all correct, it is expensive but very very worth it.
I’m glad to know I don’t have to stay on it for 2 years, had some joint pain and muscle spasms, but after 4 months, this seems to have settled down. Just wondering if Medicare will cover second bone density scan at 6 mos, does anyone know?
If Medicare won’t pay it, I found out the cash fee is around $200.00. I believe all insurance only pay for the test once every two years, but I want one in December, after I’ve been on Forteo for six months. If insurance doesn’t cover it, I’ll pay for it. I’ve had six broken bones in my Spine almost all at once. Had first four and then the last two.
At 32, I had fractured both hips, multiple times, both feet countless times, other little fractures here and there. I was constantly in some sort of broken state. Since I wanted to have the option to have children, my doctor prescribed Forteo, as it doesn’t stick around in the body for a long time. My doctor personally spoke with and wrote to my insurance company after they rejected the payment for the very expensive drug and they agreed to cover it. I took the daily injection for 9 months. It has been 5 years and I haven’t fractured a bone since. It was worth the risk for me – a tiny chance of horrific side effects for the opportunity to walk around, unbroken for the rest of my life.
Why did you only have to take it for 9 months and not the 2 years? I just started this week. Never had a broken bone in my life until a boating accident last Thanksgiving. Found out I have osteoporosis and am not having a smooth time remembering to take it or put it back in the frig!
You and your doc should discuss this. You do not necessarily need to take it for two years–that is solely the mark where the risk may outweigh the benefit and, actually, the first few months of Forteo gives the most benefit to your bone density. The benefit tapers off from the six month mark the longer you use it though there still is a benefit.
I am a 75 year old female. About 2 years ago, I fell and broke my hip/femur (or broke my bones and fell). After surgery and during recovery in hospital/rehab centers, I was prescribed forteo. The price of this medication is now out of sight. My medicare supplement insurance will not pay since I am in the”coverage gap” and the cost is over $2000. The gap is not just financial but also a barrier to getting this medication. An important side effect of taking this medicaton that needs to be listed is POSSIBLE BANKRUPTCY. What options do I have?
Dear Caroline,
I am sorry to hear about your hip fracture and the pain you are experiencing. Remember – you always have options! Whether you choose to take Forteo or not is entirely your decision. It’s you, not your doctor, who will be paying a great deal of money and experiencing any side effects. No one can “make” you take a drug you aren’t comfortable with!
Caroline, I’m 65, at last count, had 39 fractures in my body, was averaging 3 a year. I’ve been on Forteo about 6 months, no fractures yet, but too early to tell if it’s due to Forteo or just being more careful. Just about all the major pharmaceutical companies have Patient Assistance Programs, in which they get you the medication free or at a reduced rate. You might want to check with Lily and see if this is available. I’m very low income, so copays are not a problem for me. But, back when I was still working, I was able to get Celebrex, which was very high when it first came out, for free.
There are outside agencies that will help with your expense. In fact Eli Lilly paid the largest percentage of my 2 year use. Get a hold of them. Or have your doctor call them to say you have to use this drug. I couldn’t have afforded the $1800 a month use. But 2 years was covered completely.
Be glad you did not have the funds to take it, the side effects are worse than they say. I take minerals and try to eat properly and have excess energy now and I am 74 years old. Still have the swallowing side effect. Hope to keep working on it and hope the swallowing improves as time goes by. Sorry I took it. First time I ever took a drug. Last time I will do it hopefully. Tanuel
Call Lilly cares perhaps they will donate the meds also the needles and pen. It’s all according to your financial need. I pay O thank God and the Lilly co
I am a 62 year old active female. In January 2015 I was diagnosed with severe osteoporosis in my spine and right hip. Doctor prescribed Forteo. My insurance company (Florida Blue) has denied coverage twice, so I am now self paying $2000.00/ month. My husband and I are both retired and I am not eligible for Medicare. Forteo Connect will only help with reimbursement after what my Florida Blue pays. But because my insurance has denied coverage twice, Forteo Connect will not help with any reimbursement. Where is the sense in this?? My T score is -3.6 and I have broken ribs and toes just thinking I was clumsy. I am now on a weight lift and activity restriction which has dramatically effected the quality of my life. Anyone else have trouble with insurance or Forteo Connect??
I’m an early 40’s male that had 2 Parathyroid Adenomas removed. The Parathyroid condition left me with multiple spine fractures and Osteporosis -3.5 T-Score. Been taking Fosamax for 6 months and only saw a 0.2 point increase in hip/spine density. Forteo has been recommended. Not sure what to do. Also have intractable bone pain.
Dear A.F.,
You are already on the right track – you’re doing your research! I encourage you to take full advantage of the free information on this site, and look carefully into Forteo and Fosamax, and gather all the information you can. Good luck!
I took Forteo about 4 Years ago, since then, I have been diagnosed with Vasovagal Syncope Syndrome, which is a slowing of the heart which can be triggered by just about anything. I have had about 6 episodes and have been in the hospital on all those occasions. When the heart slows, your blood pressure drops low and you go unconscious, not a fun thing to live with. I have read that there have been other Forteo users that have been diagnosed with heart problems since taking it. I am curious what the data is.
Hello this evening I decided after only a week of taking Forteo, that the side effects are unacceptable and one of these effects is the increased rhythm of my heart. I am not going to inject tonight. The un-natural way the bones get ‘stronger’ I don’t like.
Dizziness sickness and generally feel ill.
My T score ios -4.2, started taking Terifrack by intaas. 3 fractures in spine, one shoulder dislocation, and other minor fractures at some places.
advise
I am looking for some ideas for my wife who has osteopososis (t=2.8). This is caused by taking the blood thinner warfarin for 21 years because she has a mechanical replacement heart valve. Many people may find themselves in this same dilemma. Vitamin K is at the root of it. In order for the blood thinning to work, vitamin K must be in scarcity, so you can’t eat a lot of healthy greens. When the warfarin puts vitamin K into scarcity, the liver makes less of the clotting chemicals so the blood is thinner, but it also makes less of the proteins needed to bring calcium into the bones, so they get progressively weaker. All the normal prescriptions for exercise and healthy living will not work to maintain bone health if the calcium bearing proteins can not get to the bones. What to do? I thought Forteo might be an answer, but it looks bad.
Hi Danny,
First, I commend you for doing this research on behalf of your wife, and gathering as much information as you can before ingesting osteoporosis drugs.
Warfarin can be considered one more acidifying drug, so following the 80/20 balanced diet (as described in the Program) is a perfect solution. Believe it or not, even people taking bone-depleting drugs like corticosteroids have been successful while on the Osteoporosis Reversal Program. You and your wife can check Real Life Success Stories here:
https://saveourbones.com/testimonials/
Know that I’m going to be given Forteo as a solution. Seeing endocrinologist tomorrow due to major bone issues caused by Actonel
8/10-4/10 took Actonel as osteoporosis preventive.
Medical issues:
1/12–fell, fracturing L3
4/12–left jaw dental work
8/12–fell, breaking left shoulder
10/12–left jaw, dental work
11/13–spontaneous fracture of right femur
4/14–removal of all molars in lower left jaw due to jaw deterioration
7/14–spontaneous fracture of left femur
2/2-left hip began aching as leaving airport.
Approx 2/18–spontaneous left hip fracture.
2/27–3 pins inserted into left hip
I took it for two months. I was surprised to not have any side effects as I am really sensitive, usually, to medications. I do worry about the cancer concern. I am exercising more than I was and found that it helps in so many ways. I’m on a whole food, plant based diet, so I feel I’m doing the right things now. I have taken Actonel in the past and I’m a bit angry about having had the wool pulled over my eyes then, but glad to have stopped it. I’m sure it did a lot of damage. I’m still not sure what to do. My doctor supports the healthy diet and is more alternative than many docs. Because I have broken some bones over the years, as recent as a broken ankle last year, where the surgeon said my bones were “soft,” he says that it’s more risky to continue to break bones than the “outside chance” of getting cancer. The C word is scary. I’ll keep reading your reviews, but need to decide soon. Wish me well. Lynn.
Hi Lynn,
Good for you for asking questions and doing your research. Personally, I can’t imagine risking cancer to take a dangerous drug that, ultimately, won’t be good for my bone health – especially when there are effective, drug-free options like the Program. 🙂
Hi Vivian. Thanks so much for the reply. I used it for 2 months but can’t afford it. He has given me some forms to apply for help from the company and says…get this…”You have more concern over broken bones than cancer, at your age.” I am concerned about the bones, but am trying to up my exercise and keep an alkaline food plan. I hope it is good enough. Scary!
I’d say both are important health concerns! Kudos for sticking to your beliefs, and choosing to go drug-free.
I agree
I am a 29 year old registered nurse and currently nursing my 9 month old daughter. 5 weeks ago I fell down the stairs, fracturing my T8 vertebrae. The official diagnosis was a 27% compression fx along with several other injuries including 2 bulging disks. I was put in a brace preventing me from bending. At my 2 week follow up appt the fracture had worsened to a 30% fracture. My neuro surgeon recommended I see a bone health specialist. I saw her today and she has recommended I take Forteo for a month to try and avoid surgery. The issue at hand is I have multiple bilateral kidney stones and have had these for the past 2 years. She is not sure if I can start this medication due to these stones and the possibility of making them larger or even multiply. I will have lab work done tomorrow to assess the risk. I’m also nervous that it may harm my child therefore I will have to stop breastfeeding. Now reading about the cancer risk scares me. I’m only 29 with a new family…not sure it’s worth the risk.
Danielle, my heart goes out to you – it sounds like you have a lot on your plate! The decision to take drugs or not is, as always, entirely up to you. I can tell you that drugs do not heal; they artificially mimic the healing process and/or manage symptoms, and there is always a price to pay. You don’t mention whether or not you have the Program, but here’s a note on healing fractures.
It’s important to make sure that sufficient bone and collagen building minerals are available, such as calcium, magnesium, zinc, boron, manganese, and copper. Vitamin K and D3 are also very important, as well as B12 (preferably taken with the rest of the B complex) and Vitamin C. Also, some antioxidants (lycopene and polyphenols) help build new bone. Maintaining an alkaline body pH is also very important. All these recommendations are also applicable to the prevention and reversal of bone loss.
What is “the program?” I Have numerous side affects from Forteo only taking it 6 wks off for 1 wk to see if issues subside
“The program” refers to the Osteoporosis Reversal Program. 🙂
I have been on Forteo for 18 months. No side effects, no problems. My first bone scan after a year was status quo (-3.3 in the hip), but no deterioration either. I am 52, and my doctor, who is in contact with another osteo specialist, highly recommended forteo for 2 years. I am small, thin, & physically active with a family history of osteo. I will follow through with treatment in the hopes I can keep what I have and maybe even ski again.
I am 25 and suffered a intracapsular femoral head fracture on my hip. It has been 3 months and it is still of nonunion despite my femoral head being alive.I visited another doc for a second opinion and he recommended Forteo for 1 month. Hopefully it will heal it right up or i will need hip replacement. Does anyone have their hip healed thanks to this drug?
I am a 55 yeard old hypo-gonadal male with osteoporosis. I have been on Forteo for almost two years now. I have had no side effects except pain and swelling at the injection site. Prior to starting Forteo I had fractured 9 vertebra. Anything from bumping my head getting in the car to walking would fracture one. Since that time I have gained some height back and to my knowledge have not broken any more. I am due for a scan soon. At that time my rheumatoligist and I will decide how much longer to continue treatment or consider alternatives.
Hello. Are you serious? Did Fosamax help you restore height you lost due to vertebrae fractures
After 2years on Forteo my COPD has disappeared,no more steroids,or antibiotics. Thanks to my Doctor for a new life
please tell me more!
Send study information on how many people were in the study & how mow many people developed cancer
You won’t see that from this site as it is designed to scare you away from a drug. What this site fails to convey is that the rats studied have open epiphysis which allow the bones to grow unopposed and that humans have closed epiphysis. The site also fails to mention how high the dose to the rats was…like 60 times the human equivalent. You should all ask as many questions of this site as you do your doctor. No drug is right for everyone and no website driving you away from a specific medicine is without agenda.
For those who do NOT have a problem with multiple fractures without major trauma you don’t understand how painful a vertebral fracture is! As others have said, my vertebral bodies sustained anterior compression fractures with as little as stepping off a 3 inch curb. These fractures really hurt! And nothing can be done to stabilize the fracture such as putting your wrist in a cast. No you are condemned to Jewett Braces that are incredibly uncomfortable and you STILL hurt.
Ortho surgeons are unable to fuse or do other surgeries because of the fragility of the bones. My last rib fractures came from radiation therapy for breast cancer. I still have severe pain after one year.
So Yeah! I will take a rare possibility of osteosarcoma over ANOTHER fracture.
Also falls have increased by 50% over the last year in the USA. Fracturing one’s hip may put you on a course of bedrest, further bone loss, and the possibilities of blood clots and pneumonia…then at times death.
Fractures ARE a big deal in us older people. I am glad that I am taking Forteo. I am a widow who lives by myself with a service dog…I just CAN’T suffer another fracture!
And the subq injections are no big deal! It uses a 33 gauge 3/16th inch needle..the diameter of a few hairs. I don’t even feel the needle.
Pls advise that at the age of 44, taking teripartide is good or not. I have multiple fracture in my spine, one shoulder dislocation and some small fractures at other parts of the body. I am on taylors brace since last one years. doctors has advised me Terefrack with calcium and vitaminin D. Pls advise
My mom has taken Forteo for 18 months now and plans to finish to the two year limit. She has not had any major side effects and is wondering if there’s a way to take a maintenance dose past the 2 years. Her reason for choosing to take Forteo in spite of the risks was very well researched as she is an CRNA/RN. She opted to give up her other medications and their potential side effects for this one because she has had 3 spontaneous fractures of vertebrae and ribs from simply bending over. She is a care taker for my father and is a very active 77 year old. She has not had any further fractures and feels she would rather take the medicine than live Life as an invalid. The incidence of sarcoma is rare and everyone reacts to medicine differently. While this may not be for everyone, It is working well for her. I’m thankful she’s been able to retain her quality of life and has not had to slow down or live in fear of daily life.
I have been taking forteo for over a year and a half and have yet to ever experience a side effect. I am not taking the drug for complete osteoporosis reasons, but rather due to a bone disease called hypophasphatasia – causes me to have numerous bone fractures (you can look it up if interested but to long & detailed to get into). There is no cure for my disease and this has been a Godsend in my experience. I got no new fractures while taking the drug. I realize all medications come with risks but IMO its been worth it.
headdr23,
I am so glad to see your post. I am 56 and have recently been diagnosed with hypophasphatasia. I am currently trying to heal stress fractures in my left foot and an acute fracture of the 4th metatarsal in my right foot. They don’t seem to be healing and the offer for using forteo may come soon. I would love to know more about your experience. Please let me know if you would care to share. I won’t take up too much of your time. Gratefully, Ron
I couldn’t agree more, Greg!
I should add a few points that appear to have been missed. I was diagnosed with Osteoporosis and I’m 48 year old male, with bone density T-Scores as low as -3.7 in my Femur’s, pelvis, and spine. Prior to the break, I was i the gym 4 times a week, and did a lot of weight lifting and had for 20 years (my loss was due to hypogonadotropic hypogonadism). I had stress fractures throughout my femur’s, pelvis, lower spine, and ankles, with some particularly bad fractures in the femoral necks on both sides and in both ankles. I also had a long history of fractures in my ribs. I was essentially unable to walk and I’m not even 50. Something as simple as rolling over in bed was excruciating and could easily result in a fracture. Standing up would take about 60 seconds of horrible pain, and then walking would take another 30 seconds or so of very small steps until my legs and hips would bear the weight. I was prescribed Forteo, The results have been nothing short of miraculous so far. Within 2 weeks I was able to walk again with some pain, and the fractures in my ankles appear to have begun healing when a year had seen no improvement at all. I was able to remove my ankle boot after 2 weeks. At 3 weeks I was able to roll over in bed relatively pain free, but with some soreness still evident. The people in here aghast that someone would risk cancer should consider the pain involved. Sometimes the end does justify the means. I was told that due to the location of some of my fractures, a simple fall could fracture my femoral necks and pelvis, and I would have hip replacement before I was 50. After 3 weeks I could stand without pain, and walk for much longer distances with no pain, although longer starts to cause some ache. I’m hoping that resolves as my bone strength improves.
Now, on to some additional info. I did some pretty lengthy research on this drug, and it is true it causes cancer in mice, but some information seems to be missing here. The incidence of tumors in mice was noted only where there was new bone growth. That’s important because a mouse never stops growing bone. A human’s bones grow to a certain size and then they are relatively stable for the remainder of your adult life. A mouse or rat’s bones continues to grow until death. The tumors were only evident on that newer growth in rats, where a human wouldn’t have that type of bone growth. As to the incidence of cancer, there have not been enough cases of cancer to indicate that the Forteo was even a causative factor. The cancer is so rare and the incidence of such cancer in humans remains rare, even on this drug, but it still received a black box warning to err on the side of safety. If you can recover via other means, then this may not be for you, but if your life is impacted the way mine was, it wasn’t even a consideration, and I refuse to do bisphosphonates.
I’ve also seen comments that all bone growth is lost. I have not seen that to be the case in the studies I’ve read. They indicated that although there is some bone loss, it is actually smaller than the bisphosphonate bone loss after each drug was stopped. The longer lasting effects of bisphoshonates risks bones actually shattering due to the breakdown of the body’s natural ability to tear down old bone and replace it with new. Forteo simply produces new bone growth. biosphoshonates ‘disrupt’ the natural process that breaks down bone, causing new bone growth to simply pile onto the old bone growth. A ‘house built on sand’ applies here. For some it can cause brittle, almost crystalized bone to just shatter due to the weakened bone that should have long been torn down by the body.
Forteo’s process is actually not ‘unknown’ as implied. It increase serum levels of calcium partially by bone reabsorption, BUT, with the intermittent injections, it hyper activates more osteoblast than osteoclasts, and osteoblasts are the essential engine in building new bone. As long as you have the raw materials, it works like gangbusters.
As far as the cancer incidence, they had 2 cases of osteosarcoma in 10 years following it’s approval (it was approved in 2002). The incidence of cancer was so small, they could not say with any certainty that Forteo was a factor. Natural options are an excellent choice if you have that option, but when you get to a point where simply walking puts your long term health at risk of severe fractures, it should not be left out as a consideration.
As to side effects, I’ve only seen mild aches for 2-3 hours every so often, usually about 3 hours after injection. They go away on their own.
I am also now back at the gym, and lifting weights as my body allows. I also ensure I get plenty of Vitamin D3 (about 6000 iU a day) when I’m not out in the sun enough, and I have it checked regularly to ensure those levels don’t get too high. You cannot get enough Vitamin D through diet alone. Only supplements, or sunshine will provide enough. I also take 1200mg of calcium a day, broken down into two does since you can’t absorb much more than 600 mg in a dose. NOTE: You do have to be careful with calcium though as it can affect a huge range of medicines due to it’s ability to affect absorption. Drugs.com is an excellent source of information for interactions.
As with all things, talk to your doctor before do any medication, or any homeopathic treatments. Sometimes you can do more harm than good. Be proactive. Research, research, and research some more, then have a real dialogue with your doctor. If your doc won’t speak with you at length, get another doctor that will.
This website is misleading. You are correct in your comments. It is a shame that people who need this drug may be scared away by this misinformation.
Thank you for your very informative comment. After taking Actonel for two years my bone mass continued to plummet. Last year I was simply coughing and I shattered my L1 vertebra so badly that it entered into my spinal column. After 6 months it continued to compress. At first I was afraid to take Forteo after my bad experience with Actonel, but finally agreed because the back pain was so intense that I decided to give it a try. The last MRI showed the fracture is finally stable. I am walking again and feel so much better. With a healthy low salt diet, which includes plenty of fruits and vegtables, core strengthening, and walking I am hopeful that my bones will continue to improve.
I am so sorry to hear about your fracture, Chris, but that’s good news about its healing and your bone-healthy lifestyle. Keep up the good work!